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Wednesday, October 22, 2008

Meet Lauren

Lauren is our 2.5-year-old daughter -- our youngest. She has an amazing smile and a captivating personality that's made all the more so because of all of the challenges she's overcome. She has beaten the odds every time, although sometimes not for the better -- like it's very rare in kids under 5 to have walking pneumonia. Lauren just got out of the PICU in Knoxville after fighting it off. It's difficult to capture the magnitude of what she's been through and just how much of a true miracle she really is, but here goes...I apologize if this rambles or meanders.

Lauren was born with a rare heart defect. The doctors told us that she wouldn't survive the delivery, then that she wouldn't survive the first day, then that she would never leave the hospital. As you can see from the picture, you'd never know it from looking at her!

Her left ventricle never formed correctly, so basically it looks and acts like mush. Consequently, the heart doesn't pump blood as efficiently as it should. On top of that, she has pulmonary hypertension (high blood pressure in her pulmonary artery). They believe this is partially due to the left ventricle not pumping as well as it should causing blood to back up in the pulmonary artery, and also lung damage caused from being on a ventilator so long when she was born and once when she was very sick.

She's also completely tube-fed. That's a long story, too, but basically it was installed as a kind of side effect from a stomach surgery at 10 days of life. She had trouble eating and getting enough food, so they left it in. Then her cardiologist in Philadelphia (one of the leading doctors in the US in his field) decided to make her exclusively tube-fed to prevent further damage to the lungs and allow them to "grow new lung" while she's small and her body will do that. She's been that way for 2 years. It's been very hard at times, especially now that she's a toddler.

Lauren is noticeably delayed in motor skills, as well. She learned to sit up and roll over quite late and didn't learn to walk until she was about 2. She can also climb up the ladder at the playground and go down the slide by herself. Those feats are all pretty amazing, though. The doctors and therapists are surprised that she's as capable as she is. She has extremely low muscle tone and her muscles aren't formed quite right. Conequently, she can't jump -- at all -- and is very unsteady on her feet and clumsy, resulting in 3 broken arms in 4 months. So, we also have specialists evaluating her for possible genetic or mitochondrial disorders that could help explain it (but may or may not be treatable). We're also having tests run to see if there's a bone problem.

On top of all of this (and perhaps to a certain extent because of it), she has a tendency to get sick easily -- and frequently ends up in the hospital. Not that she has a compromised immune system -- just that she doesn't have the fighting power that most of us have. She does have an amazing resilience and personality, though. She charms everyone she comes in contact with. As an example, her old pediatrician (who was with her since Day 2) has now become a family friend even though she's moved away. She's even convinced doctors that she really wasn't sick from her cuteness -- sometimes with the result of winding up more sick later.

She bounces back or comes through challenges very well, though. She wasn't supposed to survive birth. She wasn't supposed to survive stomach surgery at 10 days of life. She survived two septic shock episodes, including one where her fever rose to about 107 and her blood pressure dropped to about 40/12. Even though frequently requiring hospitalizations for illnesses because she crashes at the onset, she usually recovers within a day or two of being hospitalized.

It seems clear to Cristi and I that we have been eyewitnesses to God's power to work in people's lives. We attribute a large part of Lauren's progress to prayer -- not that we always get what we pray for (we certainly haven't) and not that this life is easy -- but we have learned that if we rely on Him, He will bless us in ways that we don't expect, want, or imagine.

I can't adequately tell you about the miracles this girl has been party to -- both obvious ones and successions of "coincidences" that defy the laws of probability. However, as a small attempt, we participated in a program at church in the spring, called Defining Moments, where people shared stories in dramatic ways of times in their life when they particularly saw God at work. We told Lauren's story (Her pediatrician even came and bawled her eyes out!). It's about 8 minutes long.

You can also keep up with Lauren via her Carepages (http://www.carepages.com/ -- Page name LaurenSchwamb (all one word)). We don't update it often (usually only for bad news), but it gives us a chance to keep all of those that follow Lauren's journey (and there are a lot of them, which has been a very humbling experience for us) up to date on her. You have to register, but it's ONLY so that they can e-mail you when Lauren's page is updated; they won't sell your e-mail or spam you.

I apologize this was long, but it's hard to tell it in less time/space.

3 comments:

wow, even though I've known you all through her entire life, and even though I was there that night you presented this....I'm still sitting here crying! I love you all. Thank you for sharing your blessings with us.

Thank you for typing out the entire story even though I know it already. It reminds me every time I read it, hear it, or see Lauren that God has bigger plans for all of us if we just let Him show us.

I still remember Lauren's first day in my class. I was scared to death I was going to do something wrong with her, but she showed me that she was stronger than I expected. She brightened the entire class. I had to step out after my lesson that day to ball my eyes out because her being healthy enough to come to my class was a physical example of God's hand in her life.